Reminiscences: IAN Celebrates Tenth Birthday

In early 2006, Drs. Kiely and Paul Law, parents of a son with autism, and I spent many hours in meeting rooms where parents of children with autism, programmers, designers, researchers, clinicians, policy makers, advocates, and others, contemplated the technology, science, research ethics, and marketing behind the creation of a safe and trusted home for autism research, online. This would be a place where busy families could tell researchers about their unique experiences and priorities, researchers could learn from families and find appropriate participants for their research, and the information that researchers learned from this partnership could advance autism science and be shared back to the community. Kennedy Krieger Institute became our home and Autism Speaks generously provided our initial funding.

At that time, many autism research projects could not find enough families to participate in research and were unable to go forward because of lack of participants, and the world knew much less about autism. Many medical conditions had research registries—places where people could sign up to be matched with research—but autism did not. And autism research, like many other research fields involving human participants, was a one-way street with research ‘subjects’ participating in studies and never learning of the results or helping to determine the research agenda.

This was a great opportunity to speed up autism research by allowing families to participate in autism research online, for researchers to learn directly from families, and for the community to learn directly from researchers.

In April 2007, we had a big public launch, and with a lot of help from our friends, more than 15,000 research participants had consented to participate in our research program by the end of May. In April 2016, some of those original participants are still telling us about their experiences. To all of our tenacious originals, thanks for sticking with us!

In 2009, we began working with a new partner, the Simons Foundation. This partnership continues to this day and has allowed us to continue our work linking the autism community and researchers.

A Decade Later

Autism research, knowledge, advocacy, language, and thought have progressed over the past ten years, and IAN families have contributed to that change. Adults with ASD are our partners in research and we are now looking deeply at the issues and successes that teens and adults face. We have done groundbreaking science exploring such topics as bullying, elopement, sound sensitivity, twins and genetics, and the contributions of grandparents. A diverse set of organizations, including, but not limited to, the Centers for Disease Control and Prevention, the National Institutes of Mental Health, the Grandparent Autism Network, the Autism Research Institute, the Autism Science Foundation, and the Global Autism Collaboration have worked with us to improve the lives of people with autism.

Surf's Up! IAN is now the Nation's participant-Powered Research Network for Autism

In 2015, IAN received a three-year $1.6 million funding award by the Patient-Centered Outcomes Research Institute (PCORI) to be part of PCORnet, the National Patient-Centered Clinical Research Network. Participant-powered research (we prefer to use the word ‘participant’ over ‘patient’) is the wave of the future. In surfing terms, we caught the wave early, and now this funding will help us ride that wave into the future. There is still so much about autism that is not known and resources remain inadequate.

Some Fun Facts about IAN

We now have more than 54,000 research participants from all over the world (but mostly the US, followed by Canada).

If you come to the International Meeting for Autism Research in Baltimore in May 2016, visit our exhibit. We will be serving up real birthday cake and some fantastic scientific presentations. So come and share the sweetness.